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Vitamin Supplement Suggestions


cinderellad

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cinderellad Newbie

I have been symptomatic for 2 1/2 years but only recently diagnosed. I had negative blood work and positive biopsy. My biopsy actually read "treated celiacs disease. This may be because my rhuematologist mentioned that he felt I had celiacs or Crohns disease and I somewhat altered my diet (breads, pasta, bakery items). A few years ago I had lost about 10 pounds, my hair starting falling out and I had horrible knee pain. The weight and hair loss were attributed to "stress" and the knee pain was thought to be arthritis due to years of running and cartilage damage. After being seen by two orthopedist, having Hylagan injections and no relief I was sent to a rhuematologist that evaluated me and referred me on to a gastroenterologist. I also had 9 months of stomach pain, and woke most nights in a sweat so sleep deprivation became an issue also. I started to see a therapist in the middle of all of this because every time I mentioned my symptoms to friends/family they informed me that it was "stress" and I was doing this to myself. I began to think I must be really nuts if I could inflict all of this on myself and not be able to get it under control. After being on the diet for the past 3 weeks, my pain is mostly gone, the night sweats are gone, my hands are not swelling , I can almost bend my toes painlessly and I am sleeping better. However, my hair is still falling out, I am very tired, and my gums have started bleeding when I brush. If anyone can recommend any vitamins/dosage I would appreciate your help. I currently take a multivitamin specifically for hair/skin/nails and glucosamine.


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ianm Apprentice

Welcome. I find liquid minerals to be the best thing for me. I get the New Vision brand. www.newvision.com. Liquid vitamins didn't seem to make much difference for me but some people here swear by them. I take vitamin pills that are gluten-free. I used to get night sweats by the bucket full but those are gone now. 3 weeks is not enough time. It seems to take about an average of 3 months for things to really improve and a good year to become healthy. Keep at it because it is worth it.

celiac3270 Collaborator

Centrum is gluten-free and I'd recommend that.

I'd also recommend that you start taking a folic acid supplement

Lesliean Apprentice

Isn't it like a wonderful miracle to feel all around better? Celiac can lower bone density so while the intestines heal it can help to be careful to get enough calcium. Anemia also is common as is B vitamin complex deficency, especially B12. Some people take sublingual B12. I like Centrum Silver because it is cheap and gluten-free. Some people like to add fish oil but I forget what they are adding back-just that they said it helped a lot. I love glucosamine. My knees don't crack anymore. Maybe it would help your joints. I know someone with arthritis (a common side effect of Celiac disease!) who found great relief in glucosamine (1500mg a day). If your stomach gives you trouble, some people like DGL licorice which is sold in health food stores and helps with the gassiness or burping. I drink a lot of green tea and medicinal teas like ginger and licorice.

My running was getting so difficult I thought maybe I was just getting old, but it was really just Celiac disease and I feel better than I have felt in 10 years.

Leslie

KaitiUSA Enthusiast

I like the liquid vitamins especially while intestines are healing because of the way it absorbs in your body. I use Liquid Vitamins Plus by Utrition.

It is probably good to take sublingual B12 vitamins too.

Other things that help are probiotics and enzymes...with the combo of what I took while I was healing it really gave me a boost.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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